Do You Remember March 31, 2005?
On March 31, 2005 Terry Schiavo died. If you don’t remember the name Schiavo, maybe you’ll remember that there was a nationwide controversy surrounding her husband’s efforts to pull the plug.
This case – probably mostly forgotten – was a high point for “the culture of death” and a low point for prolife and disability advocates.
But why bring it up more than four years later? Along comes Rom Houben, a “victim” of being misdiagnosed as being in a vegetative-state coma. From 1983 until recently he was treated as if he had no awareness or brain function. It was recently found that his brain was completely intact and he was fully aware of everything going on around him. He appeared to actually be in a condition labeled locked-in syndrome.
Let’s think this through. He had no way to let people know he was conscious and was presumed otherwise. Dr.Steven Laureys carried out a brain scan which led to the discovery that Houben was conscious and aware. Dr. Laureys also did a study on 103 patients at the Coma Science Group and determined that 41% of them were misdiagnosed as being in a vegetative state. These patients were actually in what is termed a minimally conscious state.
There appear to be a number of reasons for all of the misdiagnosis. Doctors diagnose on observation predominantly. The only thing they can observe is patient behavior which can be misleading. Unfortunately for Mr. Houben, he was partially paralyzed and could not give a motor response. There are standardized rating scales for assessing coma patients. There are good ones and not so good ones. The not so good ones tend to over-diagnose vegetative state. There also seems to be a prevalent “worldview” that favors a vegetative state diagnosis for rather sinister reasons.
If Dr. Laureys’ results can be generalized, for every 10,000 patients, 4,100 are misdiagnosed. Many of them spend their lives being treated like doorknobs or are easily disposed of. Even with a minimally conscious state, these up to 41% of patients could have a much better quality of life and, well, not be terminated (that’s a euphemism for killed).
Dr. Daniel Amen, an advocate for brain scans, in a recent blog commented,
“This story makes me wonder how many other people in comas are actually more aware than people know. If we never look at the brain, how do we know?”
Then there was Terry Schiavo. Was she one of the 41% misdiagnosed as being in a vegetative state? She did have brain injury, shown to be significant in an autopsy. Terry’s situation provoked a confrontation which screamed of “seeing the facts via your personal worldview.” This happened on both sides, but clearly there did not exist a level of certainty that warranted death by starvation.
Are doctors rushing to judgment with coma patients and facilitating unwarranted patient termination (euphemism)? The answer could be yes or no or sometimes. It is clear, however, that nobody should be taken off life support without conclusive scans of the brain that rule out any misdiagnosis. If someone appears to be in a vegetative state, but isn’t, there is little to excuse cutting the tubes.
There is a “culture of death” all around us. It rushes to judgment with excuses like “quality of life.” Terry Schiavo – without more than a CAT scan – was a mistake – merely because it seemed people’s worldviews rather than medical evidence, decided her fate.
Even though one could be horrified by the thought of 23 years of locked-in syndrome, Mr. Houben has been quoted as never giving up because he knew his family was supporting him. He has not been quoted as saying “I wish they would have killed me.” Terry Schiavo had “some” family supporting her – just not enough support to counter the “culture of death.”.
The “culture of death” is already busy. They claim it’s a fake. They claim that it is a compelling reason for pulling the plug more aggressively. They criticize “conservative types” for the potential latching on to this story to discredit plug pulling. They are worried people think we should keep everybody alive.
Even if this story is discredited, the point that we should use brain scans for more conclusive evidence for decision making still stands. In this post, the only assertion is that brain scans should be done so that the level of certainty is high before such a decision is made.
By the by, could you doctors and medical types come up with another label than describing a human being as a vegetable. At the risk of being accused of hyperspeak, it is almost sacrilegious – based on a very poor metaphor and joke.
Joe Johnston Sr.
Links on the story:
Belgian Case Reignites ‘Brain Dead’ Debate as Catholics Order Force Feedings
Euthanasia Backers Discount Rom Houben, Man Who Spoke After False “Coma”
Blogger Claims Whole Thing Is a Sham
Dr. Daniel Amen Comments on Houben and Brain Scans
Tags: disability advocates, Terry Schiavo, vegetative state
Filed under: Rants About the News
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